A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)

Friday, April 30, 2010

Yesterday was my introduction into the world of PPTs. Well, it may be more accurate to say that my first PPT took place last month when I bravely sat down to a table with five of them and one of me. This was a meeting to discuss whether or not she qualified for services. Since I wasn't worried about the outcome, I didn't bother with reinforcements. At 9:15 am yesterday, my husband and I walked toward a rather large table with almost a dozen educators. I hate to paint a portrait of "sides" as I know we are all on Penny's side, but I have heard enough horror stories to know that sometimes there can be a "them against us" mentality. The people that had my back were Scott and Penny's Birth to Three providers. Penny's occupational therapist is herself a parent advocate and is very knowledgeable in how these proceedings should go. I also have the unfathomable support of Penny's physical therapist. Her attendance at the meeting felt like a wall holding me up. Penny's speech therapist and service coordinator/sped teacher were also present, and each had a chance to speak to Penny's strengths and then go on to discuss her needs in the preschool class.

On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and aahs at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the IEP (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our requirement for her would be that she be placed with a para that can sign and understand her signs.

We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also qualified for summer school (or EYS, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.

Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the bussing schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.

I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. ESY is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.

Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very severely delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with IEPs. At first I was told it was from 12noon to 2:30 (which is an awful time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no bussing for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on cognitive skills along side the integrated class.

Once I get a copy of the PPT I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .

Wednesday, April 28, 2010

Sorry I have been gone for so long. I was sucked into facebook. But I intend to disable my account come June 1 as I am going back to school and I do not want that around as a distraction. Here is my little princess. So much has been accomplished this year. She can now say a handful of words. Her favorite is "no" and she still calls me "baba" She can use about 70 signs, I wrote out a list for her preschool class and it astounded me.

Yes, she is going to school soon which is kind of why I want to get back into this thing. I was thinking that others that come after me may benefit from our experiences. Penny has been doing so great since October, no real health concerns, no roadblocks with services, that I didn't really have too much to post. But in a months time she will be in school!! Aye!

Her PPT is tomorrow. I downloaded the state of CT preschool ciriculum standards and found that she should be able to meet all those standards. She already can identify some letters and she knows colors, it is not a stretch to expect her to do so many other things during her first year of school. I know that in the fall, she will have school five days a week from 12 noon to 3:30 pm. Yikes!! I am going to miss that face so much. Well, if I have any readers around, tell me, what are YOU up to?

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.